Ezekiels Care Fundraising

Ezekiel was born healthy at full term. However, life took an unexpected turn around his third day when we discovered he had untreated severe jaundice, which caused brain damage. After finding him unconscious, he was rushed to A&E and NICU/PICU, where we were told to expect the worst. It was the most traumatic time of my life as a mother and for the whole family.

What was meant to be the most memorable, loving experience of motherhood turned into a lifetime of traumatic memories. Despite all immediate treatment and medical intervention, nothing could stop the damage that had already occurred to his brain. He spent weeks in NICU. I never thought jaundice could cause such severe brain damage.

His MRI scan showed severe brain damage to the basal ganglia. He was diagnosed with a very rare brain disease called Kernicterus and Cerebral Palsy as a result of the severe untreated jaundice. Everyone affected by Cerebral Palsy faces different challenges in life. In Ezekiel's case, all four of his limbs are affected, meaning he has severe physical disabilities. This impacts his coordination, balance, speech, reflexes, muscle tone, and posture. He can’t support his head for long periods. He can be very floppy or very stiff. He cannot roll, crawl, sit, or lift himself up. He can’t chew or swallow properly and is always at risk of choking. He has a gross motor development delay and is fully dependent 24/7. Ezekiel will face a life full of challenges and complications.

Ezekiel receives physiotherapy from the NHS for 3-4 hours per month. He will need countless therapy sessions, equipment, and other professional support throughout his life to help him with physical activities such as rolling, reaching, grabbing, and sitting.

I have been looking to start private, intensive physiotherapy, which is extremely costly, but it would give him a chance to one day do the little things we take for granted. Things like playing with toys, eating a burger, sitting and playing video games, reading a book, riding a bike, or running around. I want to take him to the NAPA Centre in America, where they have highly specialized therapists and equipment unavailable in the UK. He also has ABM (Anat Baniel Method) sessions for about 6-10 hours per month, costing £70 per hour. I will need to spend around £700 a month or more, and will often need to travel to America for the best intensive programs and equipment. This will be a lifelong need for Ezekiel and will become even more vital as he grows older.

He also needs adapted equipment to help with everyday activities, such as adapted transport and car seats for going out, a square float for CP children to use for swimming, adapted toys and sensory items, and adapted spoons and forks for eating. He also needs specialized equipment like the Trexo Robotics for walking.

Ezekiel is very smiley, loves Cocomelon music, and enjoys playing with other children. He is my first and only child. The thought that I may never see him crawl, walk, or say "mama" is extremely hard to live with every day. All of my income goes toward Ezekiel's care, with my immediate family also helping every month, but it is still not enough. PLEASE help me provide the best care for Ezekiel so that he doesn’t feel different from others. I am a single mom and his main carer. Together with the support of my family and friends, we work very hard to help Ezekiel reach his potential, but we also need funds to afford the extra therapies and equipment that the NHS does not provide.

Any form of donation would be incredibly appreciated. We are also raising awareness for Kernicterus disease, which affects 1 in 1,000,000 children.

THANK YOU IN ADVANCE ON BEHALF OF EZEKIEL.

Thanks for taking the time to visit my JustGiving page.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects. If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.